Document Type

Article

Publication Date

2025

Publisher

BioMed Central (BMC)

Source Publication

Maternal Health, Neonatology and Perinatology

Source ISSN

2054-958X

Original Item ID

DOI: 10.1186/s40748-025-00232-9

Abstract

Background

Parents of preterm infants experience stress related to uncertainty which impacts parent health outcomes. Less is known about the experience of parents whose infants are admitted for reasons other than prematurity. In this study we sought to describe (1) the experience of parents whose infants are admitted to a level IV NICU for reasons unrelated to prematurity in relation to uncertainty and (2) the effect of social and structural determinants on parent experience with uncertainty.

Methods

This single center qualitative study utilized interviews, questionnaires, and chart review at 2 time points: 2 weeks after admission and 3 months after discharge. Parents enrolled in a prospective study of parent mental health related to infant medical complexity were purposively selected to achieve a sample representative of the study NICU. Interviews occurred between July 2019 – September 2020.

Results

49 parents of 35 infants completed initial interviews and 26 completed follow up interviews. Parents experienced uncertainty related to diagnostic and prognostic trajectory as well as experiences prior to admission and NICU process of care. Themes included: (1) Parents of infants with medically complex presentations experience significant uncertainty. (2) Lived experience of structural vulnerability helped parents manage medical uncertainty. Some parents more readily accepted uncertainty due to prior experiences though often had fewer resources for managing needs after discharge. (3) Discrimination created mistrust preventing adaptation to uncertainty. (4) Provider counseling impacted parent adaptation. Counseling accounting for families lived experiences and focusing on practical aspects of a NICU admission such as team lead, how multidisciplinary teams arrive at decisions and steps to decrease uncertainty increased parent acceptance.

Conclusion

Parents of NICU infants admitted for reasons other than prematurity experience uncertainty related to both medical and non-medical events during their NICU stay. Communication that practically guides parents through NICU uncertainty, assesses structural vulnerability, and fosters trust in the medical system may help parents adapt to NICU uncertainty.

Comments

Published version. Maternal Health, Neonatology and Perinatology, Vol. 11 No. 34 (2025). DOI. © The Author(s) 2025. Used with permission.

This article is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License, which permits any non-commercial use, sharing, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if you modified the licensed material. You do not have permission under this licence to share adapted material derived from this article or parts of it. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creati vecommons.org/licenses/by-nc-nd/4.0/.

Download
Malin_17370acc.docx (151 kB)
ADA Accessible Version

Included in

Nursing Commons

Share

COinS